Respite care for families with children with Autism Spectrum Disorders: how services in Northamptonshire UK are working to meet the challenge

Autor

  • David Preece Northamptonshire Social Care and Health Services for Children with Autism

Abstrakt

This paper identifies the importance of respite care services for many families with children with autism spectrum disorder (ASD) but also some of the obstacles that may prevent families accessing such services. It describes how Northamptonshire County Council, a local authority in the United Kingdom (UK), is working to meet the challenge of providing ‘autism-friendly’ respite services. The paper outlines factors that families have identified as being positively associated with quality in respite care for children with autism and their families. These are the physical environment, staff attributes and their understanding of ASD, consistency with other settings, the use of ASD-appropriate approaches, individualisation, the activities on offer, and the way that children are grouped. As well as outlining the major characteristics of these services, and how they seek to meet the needs of families with children with ASD, the paper describes the limitations of these services and the challenges and issues that remain.

Bibliografia

Abelson, A. G. (1999). Respite care needs of families with children with developmental disabilities, Focus on Autism and Other Developmental Disabilities, 14, 96–109.

Barson, C. (1998). Autism: Supporting the Family. A report on the short term care needs of children with autism in Wales. London: National Autistic Society.

Beresford, B. (1994). Positively Parents: Caring for a Severely Disabled Child. London: HMSO Publications.

Bogdashina, O. (2003). Sensory Perceptual Issues in Autism and Asperger Syndrome. London: Jessica Kingsley.

Boyd, B. A. (2002). Examining the relationship between stress and lack of social support in mothers of children with autism, Focus on Autism and Other Developmental Disabilities, 17, 208–215.

Brady, P. (1998). Shaping Family Support: a study of specialist community based support for families of people with autism spectrum disorders. Nottingham: National Autistic Society.

Bristol, M. M., & Schopler, E. (1983). Coping and stress in families of autistic adolescents. [In:] E. Schopler & G.B. Mesibov (Eds.) Autism in Adolescents and Adults. New York: Plenum.

Carlin, J., Morrison, J., Bullock, J., & Nawaz, S. (2004). All Kinds of Short Breaks: a guide to providing a range of quality services to disabled children and young people. Bristol: Shared Care Network/Department for Education and Skill.

Chan, J.B., & Sigafoos, J. (2001). Does respite care reduce parental stress in families with developmentally disabled children? Child and Youth Care Forum, 30, 253–263.

Frost, L., & Bondy, A. (2002). The Picture Exchange Communication System – Training Manual, 2nd Edition. Newark, DE: Pyramid Educational Products.

Gray, C., & Garard, J. (1993). Social stories: improving social responses of students with autism with accurate social information, Focus on Autistic Behaviour, 8, 1–10.

Jordan, R., & Jones, G. (1997). Measuring quality of provision for children with autism. [In:]

G. Linfoot, P. Shattock, D. Savery & P. Whiteley (Eds.) Living and Learning with Autism: Perspectives from the Individual, the Family and the Professional. Papers from the conference held at St. Aidan’s College, University of Durham, April 7–9 1997. Sunderland: Autism Research Unit.

Jordan, R., Jones, G., & Murray, D. (1998). Educational Interventions for Children with Autism: A Literature Review of Recent and Current Research. Sudbury: Department for Education and Employment.

Koegel, R. L., Schriebmann, L., Loos, L. M., Dirlich-Wilhelm, H., Dunlap, G., Robbins, F. R., & Plienis, A. J. (1992). Consistent stress profiles in mothers of children with autism, Journal of Autism and Developmental Disorders, 22, 205–216.

Lindsay, M. (1996). The conundrum of quality. [In:] K. Stalker (Ed.) Developments in ShortTerm Care: Breaks and Opportunities. London: Jessica Kingsley.

MacDonald, H., & Callery, P. (2004). Different meanings of respite: a study of parents, nurses and social workers caring for children with complex needs, Child: Care, Health and Development, 30, 279–288.

Mesibov, G. B., Shea, V. & Schopler, E. (2005). The TEACCH Approach to Autism Spectrum Disorders. New York: Plenum.

Oberheim, D. (1996). The Support Needs of Adults and Children with Autism and their Carers in Kent. Gillingham: Kent Autistic Trust.

Ozonoff, S., Rogers, S. J., & Hendren, R. L. (2003). Autism Spectrum Disorders: A Research Review for Practitioners. Washington DC: American Psychiatric Publishing.

Peeters, T., & Jordan, R. (1999). What makes a good practitioner in the field of autism?, Good Autism Practice, April, 85–90.

Preece, D. (2000). An investigation into parental satisfaction with a short-term care service for children with an autistic spectrum disorder, Good Autism Practice, 1, 42–56.

Preece, D. (2003). Providing an ‘autism-friendly’ service for children with an autistic spectrum disorder within a short-term (respite) care setting, Journal of Integrated Care, 11, 39–44.

Preece, D. (2011). Autism, Family Life and Short Breaks. Saarbrücken: VDM Verlag Dr Müller.

Preece, D. & Jordan, R. (2007a). Short breaks services for children with autistic spectrum disorders: factors associated with service use and non-use, Journal of Autism and Developmental Disorders, 37, 374–385.

Preece, D. & Jordan, R. (2007b). Social workers’ understanding of autistic spectrum disorders: an exploratory investigation, British Journal of Social Work, 37, 925–936.

Preece, D. R., Lovett, K., Lovett, P. & Burke, C. (2000). The adoption of TEACCH in Northamptonshire, UK, International Journal of Mental Health, 29, 19–31.

Prewett, B. (1999). Short-Term Break Long-Term Benefit: Family-based short-term care for disabled children and adults. Sheffield: University of Sheffield Joint Unit for Social Services Research.

PricewaterhouseCoopers (2007). Market for Disabled Children’s Services – A Review. London: PriceWaterhouseCoopers LLP.

Sargent, J. A. (1995). The Future of Respite Care Resources for Children with Autism in North East Essex. Colchester: Essex County Council.

Simpson, R. L. (2005). Autism Spectrum Disorders: Interventions and Treatments for Children and Youth. Thousand Islands CA: Corwin.

Social Services Inspectorate / Audit Commission (1999). A Report of the Review of Social Services in Northamptonshire County Council. Abingdon: Audit Commission.

Stalker, K. (1996). Principles, policy and practice in short-term care. [In:] K. Stalker (Ed.) Developments in Short-Term Care: Breaks and Opportunities. London: Jessica Kingsley.

Tarleton, B., & Macaulay, F. (2003). Better for the Break? Short break services for children and teenagers with autistic spectrum disorders and their families. York: Shared Care Network.

Van Bourgondien, M. E. & Elgar, S. (1990). The relationship between existing residential services and the needs of autistic adults, Journal of Autism and Developmental Disorders, 20, 299–308.

Whitaker, P. (2007). Provision for youngsters with autistic spectrum disorders in mainstream schools: what parents say – and what parents want, British Journal of Special Education, 34, 170–178.

White, N. & Hastings, R. P. (2004). Social and professional support for parents of adolescents with severe intellectual disabilities, Journal of Applied Research in Intellectual Disabilities, 17, 181–190.

Opublikowane

2013-02-09

Jak cytować

Preece, D. (2013). Respite care for families with children with Autism Spectrum Disorders: how services in Northamptonshire UK are working to meet the challenge. Annales Universitatis Paedagogicae Cracoviensis Studia Psychologica, 4(1). Pobrano z https://studia-psychologica.uken.krakow.pl/article/view/15

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